How was the reference group established?

Community members were invited to be part of the group and were identified from the networks of the Consumer Advocate and the researchers on the initial projects. All members were given a two year term initially. At the end of the first term members could choose to continue to be involved. Members who did not continue their term nominated someone else to take their place.

All meetings were held in Perth. Some members lived in Kalgoorlie so were flown to Perth for the meetings. The cost of this travel was expensive but was included in the budget in the grant application so there was no cost to consumers. It was important to include members from outside the metropolitan area because that’s where there are higher levels of infectious diseases.

The community reference group met four times a year and discussed the progress of the research projects associated with infectious diseases at the Institute as well as a chosen topic by a guest speaker.

What was the purpose of the reference group?

The research group wanted guidance on what research was important to the community. Researchers also wanted help to be able to tell the community about their research. Researchers felt they could write about their research so that it could be published in journals but they needed help to be able to explain the results and purpose of the research to the community.

Has anything changed as a result of consumer involvement?

Better communication of science: the first task of the group was to develop plain language summaries of the projects so that the community could easily understand the research that was being done. They helped to clearly communicate the outcomes of the projects and the point of it. Researchers now know how to explain complex and sensitive processes within data linkage.

Influencing research priorities: as part of the meetings guest speakers were invited. One speaker gave an overview of infectious disease rates within WA. Chlamydia rates were extremely high. The community members asked why this disease was not being studied at the Institute and they wrote a letter to the Director of the Institute urging for increased research into this disease. The researchers were restricted from being able to investigate this issue as the team had no expertise in this area and so would not be able to secure funding. Researchers were able find a research group in NSW that had the expertise, and who are now using WA data within their research. Researchers reported this back to the reference group.

What worked well or didn’t work so well?

In the Chlamydia example above it was found there was a need to establish boundaries and communicate any limitations. Researchers are restricted in what they can research because of expertise and experience. If there is no experience (known as no ‘track record’ in research) in a particular subject area they will not be successful in securing funding to complete the work.

It was also necessary to explain the research process and the restrictions that are placed on projects as a result. Research takes a long time to complete. This can be frustrating if community members have never had experience in research. It’s down to researchers to tell community members about this and help them to understand the delays that can occur in getting information out to the community because of the research process.